Personal decision, but augmentation and withdrawal were brutal for me so I would personally never touch another DA. Experts say that the D1 receptors will flare up again so you may have to go through another withdrawal. At least you'll recognise the signs. Keeping serum ferritin above 100, preferably 200 is meant to alleviate augmentation because iron is needed for effective dopamine transport.
Buprenorphine nausea floored me for a week. I couldn't move without vomiting.
However, it stopped all RLS completely so I found a solution- medical cannabis. I took 0.2ml of 20% THC cannabis oil and it stopped the nausea and vomiting. After a week, I stopped the cannabis and the nausea had gone.
When I started Methadone I suffered with nausea which was improved with Zofran until finally nausea was not present. However, it looks like Methadone is no longer controlling my RLS, and next step will be Buprenorphine. Can you tell me a bit more about the THC product you used please. I live in California and have access to many products. Thank you
I use a product called Althea Champlain Cannabis oil with 20% THC. Medical cannabis is only available from a few private clinics here in the UK. Zofran is only available from hospital doctors in the UK, our GPs cannot prescribe. It's therefore quite difficult to get.
Amrob I am going throughout this path suggested by my neurologist that has PHD in rls. Was using Pramipexole for a year with the highest dose 2x0.125 plus half of a tablet, so 2,5 tablets per day. Now withdrawing with pregabaline with the intention to start prami again after 3 months break. She has done it with other patients and it works.
That's interesting DNoda. So are you re-starting a low dose of pramipexole or resuming the dose you were on? And will you come off pregabalin completely?
Yes I will start on 0,125 again after 3 months drug holiday. Unfortunately pregaba works for me for just a few weeks, then I become tolerant. So I will not take pregaba anymore when that happens. Then I will probably need oxicodone until I can use prami again. So I am only using pregabaline to get off prami.
How much pregabalin were you using? You may not have used enough. If it worked at all, it will probably work completely to control your RLS. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin."
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Thanks Sue, Pregabaline works first even with a low dose (0,75), but after a few weeks I get tolerant even when increasing the dose up to 300mg. The rest of the information is known to me and my neurologist, thanks for that anyway.
Yes my neurologist finds it strange as well, but it is like that. I have the same with cannabis oil: it works very well, but after 3 days of using I have to give it a break for a few days, otherwise it stops working.
I'm on 400mg Pregabalin and 4 x 0.2 gm Temgesic. The Temgesic is being reduced slowly. That is just enough to give me a little sleep e.g. 3-4 hours. However when I know that I need to sleep due to something I'm doing the next day e.g. driving a distance, then I will take the lowest dose Pramipexole but cut in half. Generally I will sleep with that.
Hi Amrob, could I ask you why you want to come off Pregabalin? .....I have PLMD and am taking 2400mg of Gabapentin every day - split into 4 doses - and I feel it isn't working - my nights are very disturbed. I would like to try anothger anti-seizure drug such as Gabapentin encarbil or Pregabalin, but would like to know whether it works for other people, especially if Gabapentin hasn't been any good.
The maximum dose for gabapentin is 3600 mg but obviously you don't want to split it into 6 doses 2 hours apart. If you want to try increasing it, you could switch to pregabalin which does not need to to be split but can be taken all at 1 time. The equivalent dose would be 400 mg of pregabalin and you can switch directly, but if gabapentin has never worked I suspect your dopamine receptors have been damaged by the DA you were on. In that case your option is a low dose opioid and I would suggest buprenorphine since it lasts 24 hours so you don't have mini withdrawals which you would have with the other opioids.
To come off the gabapentin you need to do so very slowly to avoid withdrawal effects. Reduce by 100 - 200 mg every 2 weeks.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Pregabalin has worked well for me for nearly a decade. I started off around 150mg and increased to 300mg where i have sat for several years. I am having some other health issues and some of the physicians that i've seen have speculated that pregabalin may be the cause. So, i'd like to come off or at least reduce to see what changes.
I take 600 mg( 2X 300) Gabapentin and 0,36 (2x0,18) mg Pramipexol 3 hours before bedtime, contrary to the common opinion in this forum, it has been 5 weeks and it is still working. Untill anything else happens this is my plan for now.
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